In Honor of Kodi

Kodi’s Story

Kodi Tutt, our 5 yr old daughter, was diagnosed with Stage 4 Neuroblastoma on March 9, 2010. The week before, she had been playing soccer, attending school, and doing all the things a normal 5 yr old enjoys.

We have discovered that Neuroblastoma (NB) is usually hard to diagnose in the early stages because so many symptoms are similar to normal childhood conditions. Kodi complained of some leg pain in the fall of 2009 and was treated for Osgood-Schlatter (growing pains)...and she grew 2-3 inches in a very short time. The vitamin E supplement she was taking was working for the pain....No NB suspected. Mid-February, Kodi began having "chest pain" which was related to a inflammation where the rib meets the breastbone. Treatment consisted of 1-2 weeks of Motrin. This condition was later confirmed by labs...No NB suspected.

Toward the end of the two weeks treatment, Kodi's color was "not right." She began to look pale and her appetite was "off." She played soccer on Saturday, March 6th - her first (and last) game of the season, and it was awful to watch. This tough little cookie tried to run and keep up with the other girls, but she was obviously hurting. She did not finish the game, complaining of pain in her side, but still...no fever, no cough, no breathing difficulties...Nothing to really suggest anything more than scheduling a follow-up visit on Monday with the pediatrician.

Monday morning (3/8/10), we were able to see the pediatrician, who ordered chest x-rays to check for possible pneumonia. Within hours, we received the call to go straight to the emergency room at Cook Children's in Fort Worth. At that point, all we knew was that there was a "mass" near her spine. Suddenly we were meeting with doctors that had "oncology" written on the nametags...Reality began to set in that this was something much different than expected.

CT scan on Tuesday showed a mass basically the size of a football in Kodi's abdomen - 5"x8"x11", with another smaller mass near the spine. Biopsy confirmed the NB diagnosis, and later tests confirmed the extent of the disease.

Kodi's entire body was affected. Bone scans showed cancer throughout her marrow and hard bones, as well as the tumors we had already known. When I asked to confirm the location of the cancer in the hard bones, I was basically told "head to toe"...when I asked additional questions to confirm what I was hearing, the doctor basically said..."it's not in her brain..."

We were admitted to Cook Children's to begin chemotherapy, which started on Thursday, March 11, 2010, and we know that we have a long year ahead. Treatment will include 6 months of chemo, surgery to remove remaining tumor after chemo, stem cell rescue and transplant (Kodi's own stem cells), and 6 months of radiation and immunotherapy.

Our understanding is that NB is very aggressive, but responds well to aggressive treatment. We are going to hit it hard, and try to do everything right to avoid infection and fevers. Thank you for supporting Kodi and our whole family throughout this journey. God bless!

Latest Journal Update

Latest scan results

Hospital called and said all scans are stable, so we will continue with the maintenance chemo.

Kodi lost a little more hearing in the high frequency (8000) range, but not in the "critical-for-conversation" range. We had her settings adjusted, and the dr is going to see if insurance will approve the newer model for her left ear so that they match (now that we are in a new calendar year). They also want to see her in 6 months instead of 12 months since she is back in treatment and had some hearing changes.